Hey, arosenbl0.......some speculation for you

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Jun 28, 2008.

  1. Forebearance

    Forebearance Member

    Hey, arosenbl0,

    I wonder if I can ask you a couple questions....

    I was thinking about your HLA-DR genetic test results of the low MSH gene. Is it correct that you have both alleles of the 1-5 type?

    If Dr. Shoemaker's theory is correct, that CFS is chronic neurotoxin poisoning, then it leads me to wonder if you could have been exposed to a kind of neurotoxin that is not on the list of things people can be genetically susceptible to.

    Have you ever been exposed to pesticides, solvents, or heavy metals?

    I don't suppose you could have active Lyme disease or have had a brown recluse spider bite. You'd know that.

    Or, if you're not genetically susceptible to a biological neurotoxin, you could be being constantly exposed to it at present. And if you got away from it, you would get better.

    I'm stumped by your case. It would be really interesting to hear what Dr. S. would say about it. I wonder if he could get to the bottom of it. But of course you'd have to do that group of blood tests in order to get a consult with him for your doctor.

    Well, I hope I haven't bothered you with my speculation.

    I notice that the "seaweed lady" aka Mary Short Ray, D.O. practices in your home town. She seems to be concentrating on mold patients, but she does seem to have an understanding of Dr. Shoemaker's work.

    Take care!
  2. acer2000

    acer2000 New Member

    Hey Forebearance,

    Thanks for thinking of me. My case is interesting... I got sick living in my apt in Washington DC, a known humid area. Some of my original symptoms included blood shot eyes, itchy eyes, coughing, dark circles around my eyes, etc... so it kind of fit with some sort of exposure. This is why I originally got the HLA test, because I thought for sure I carried the "mold" gene. I have sense moved back to Michigan where I grew up and I didn't get any better living somewhere else. So again, it kind of fit, as if I had the "mold" gene I wouldn't get better just moving, I'd have to take CSM (according to shoemaker). I had my house where I live now tested using the ERMI test he recommends, and it didn't show up particularly high on the index. I have also since spent a couple weeks at a friends house to just test out the theory and it didn't seem to help.

    My HLA is as follows:

    DRB1 0102
    DRB1 0103
    HLA DQ 0501
    030101, 050101, ... (the other ones don't matter as far as the interp goes)

    So as far as I can tell from the chapter in mold warriors, the only gene that matches shoemakers types is 1,5. I don't have DR3,4,5 genes. And as far as I can tell the 1,3 combo (the other match I have), is not associated with any of his work. So I guess I'm heterozygous for 1,5. Does that mean anything to you? :)

    I am going to have my Dr. do the other tests he says you need to have a consult with him, but I am having a hard time finding out how to do the nasal swab. My Drs. office said they can do the swab, but apparently Dr. Shoemaker sends the sample to a lab that uses the "API staph" kit, and the lab here doesn't. His office gave me the number of the lab they use, but we haven't heard back from them. They are at the UNiversity of Maryland. Have you had the nasal swab done?

    I did feel better when taking antibiotics, so I suppose I might have Lyme. My Dr. said it wouldn't be too risky to just take 4-6 weeks of doxy to see what happens. Apparently, if I am reading Shoemaker's book right, I shouldn't have too hard of a time, because I can apparently detox the lyme toxins just fine.

    The Staph sinus infection thing is also something I really am curious about, since I have these dark circles all the time, and I have sinus symptoms. Maybe because I have the "low MSH" gene, it makes me more succeptible to this type of thing? I wonder if people can have "just that", without having lyme, mold, etc.. I dunno...


    [This Message was Edited on 06/28/2008]
    [This Message was Edited on 06/28/2008]
  3. acer2000

    acer2000 New Member

    What does a brown recluse spider bite look like? Just curious...
  4. acer2000

    acer2000 New Member

  5. Forebearance

    Forebearance Member

    Hi A,

    I guess I've been thinking of you because I grew up in the same town as you did. Ironically, my parents see a doctor for their general needs there who claims to be a CFS specialist. And there isn't one CFS specialist in the large town where I live!

    Wow, your original symptoms do sound like something was irritating you. And wow, you have tried a lot of things to test out the mold avoidance theory.

    Aha, I see. So you have one low MSH gene, and one "none of the above" gene. So you would be as likely to be affected by low MSH as I would, in theory. Since I also have one of the low MSH genes.

    I'm still working on finding out more about what that 1-5 gene means.

    Yeah, my understanding is that according to your genes, if you had been around toxic mold you would be better now that you have moved, and if you have Lyme disease then taking antibiotics would make you better.

    That could be a good clue, that antibiotics make you feel better. Yeah, it might be worthwhile to try some doxy. Have you had the good Lyme test? (I can't remember what it's called.)

    One thing I might try if I were you is a couple weeks of cholestyramine, or something similar but milder like phytosterols. There's a brand called CholestePure that is recommended by one neurotoxin-savvy doctor. Those things remove neurotoxins in general, so you wouldn't have to know exactly which neurotoxin you have.

    Or you could even try some soluble fiber, which is very mild but still produces a result in me, at least. It makes me feel better. All of those things that bind with bile will reduce your cholesterol level unless you eat lots of fat while taking them. So if you didn't have any neurotoxins, the worst thing that could happen is you'd feel really de-greased and have to eat lots of natural fats to get back to normal.

    The Staph sinus infection is an interesting idea. Yeah, it sounds like a good idea for you to take that test. Too bad it's a bit difficult to get the right one. I haven't done that test (yet). That's a good question about whether "just that" could lay a person low with CFS.

    I understand that brown recluse spider bites are pretty gnarly, so you would probably realize it if you had one. The neurotoxins in them usually cause a big infection and a lot of redness, swelling, irritation, etc. around the bite.

    What's frustrating is I feel like your case should be solvable, like it's so close to being figured out, and yet I am unable to shed any light on it. I guess it would take an expert, like an experienced doctor. Having those other Dr. S. tests done would give you more data to work with, too.

    Maybe an ongoing Lyme infection or Staph infection would be the answer. Those are both things you would carry with you wherever you went.

    Wishing you better health,
  6. Slayadragon

    Slayadragon New Member

    I don't know enough about these tests to comment yet. Hopefully I will get my set done within the next week or two, after which I'll likely become obsessed enough with them that I'll be able to rattle off what means what with no thought whatsoever.

    However, the comment about the staph is interesting because one of Dr. Guyer's patients (confetti11) had this as an issue for her. He did this fancy stool test from MetaMetrix, and it came up in her gut.

    She's always had a lot of gut issues, but this one seemed major. Over the past six months they addressed the staph and she took a bunch more supplements, and she's recovered a lot of functioning.

    (She saw Dr. G years ago, then quit after she got better and went back to work full+ time. She had a really bad relapse about six months ago and so went back to see him right away.)

    I don't know if she has an issue with lyme or mold. Her VCS was negative, but think that misses a lot of cases.

    I'll be interested to hear more too.
  7. acer2000

    acer2000 New Member

    My VCS (on the computer) is "negative" by whatever threshold they use, but I still get quite a few wrong... I dunno maybe I should just see Dr. S. I have seen so many Drs so far. They all have their own theory. My current Dr. still thinks I have a "virus", despite the fact that I didn't respond to Valcyte, and my EBV has never been elevated. They want me to try gamma globulin.. I want them to figure out why I felt better on antibiotics. I think all doctors call what they can't figure out "some virus"... grrr
  8. acer2000

    acer2000 New Member

    FYI, I just had my nasal culture done. The ENT Dr. was nice and it was easy to do. Its being run by the Univ or Maryland lab that shoemaker uses.
  9. Forebearance

    Forebearance Member

    Hey, that is encouraging! It sounds like you did everything right.

    I see my doctor on Friday and I wonder if she'll want me to take this test. I wonder also if she'll want to consult with Dr. S.

    I guess I'll find out.

  10. mcflury

    mcflury New Member

    I noticed you commented to someone on what myco. ferm. was. Have you been tested for mycoplasms at all?
  11. acer2000

    acer2000 New Member

    Yeah I was tested at MDL when I first went to a "CFS" doc. It was negative, but I had been on zithromax a week before. I was recently retested, but I don't know the results yet. Ironically, the zithromax that I was on before I took that test made me feel better... I emailed Dr. Nicolson and he said feeling better on ABX is more of a significant sign than the negative test, athough it sure would be nice to know what they are goind to treat with the ABX...
  12. Slayadragon

    Slayadragon New Member

    I was just reading "Desperation Medicine" and found something new (for me).

    I don't know where to put it and so I thought I'd stick it here, since it's all related to Dr. S's work.

    In Ch. 22, he tells of a police officer who was suffering from neurotoxin illness, as evidenced by a very poor score on the VCS.

    The conclusion was that the problem was caused by "glycol ether," as a result of a small leak in the antifreeze line of the police cruiser.

    Until I read this, I was operating under the apparently mistaken belief that biotoxins caused VCS problems.

    Now it seems there must be lots of other toxins too.

    I wonder what those toxins are?

    And in that case, how would a CFS sufferer know upfront whether to go searching for biotoxins (lyme/mold/whatever) or something else?

    "Desperation Medicine" is quite the book, by the way. "Mold Warriors" is light reading in comparison.

    If I could wrap my arms fully around it though, I feel like I'd really have gotten somewhere.

    And maybe tackle "How to Lose the Weight You Hate" too.....
  13. Slayadragon

    Slayadragon New Member

    Oh, I have a question on this too.

    Yesterday Dr. Berndtson and I met with the Lab Corp rep. She had gone to a lot of trouble to research all the tests (which is not surprising since she wants Dr. B to send her more patients in general).

    The rep seemed to think that she could get all the tests run except maybe the C3a and C4a. She was going to check on this more.

    Both she and Dr. B seemed a little perplexed about the MARCONS one. She seemed to come to the conclusion that she could get it done through Lab Corp, though I'm not absolutely convinced that it will be the one that Dr. Shoemaker wants.

    Do you have any idea if there's a reason why Lab Corp shouldn't run the tests that Dr. S assigns to Quest?

    How was your C3a and C4a handled?

    Do you know anything about the MARCONS nasal swab one, even though you've yet to have it done?

    I'm going to put this on the one you started for arosenb10 too. He appears to have gotten an ear-nose-throat dr. to do the nasal swab and then sent it off to the Maryland lab that Dr. S uses. I wonder why he had to go to an ENT for it though. And also what the code is.

    I would just call Dr. S's office, but arosenb seemed not to get a good answer from them.

    I wish the directions for these were clearer! It's kind of amazing that as many people get them done as manage it.
  14. acer2000

    acer2000 New Member

    I actually did end up having the nasal swab done. His office staff wasn't the most helpful on the phone, but I just had my Dr. called Dr. shoemaker and they somehow arranged for it to be processed by the lab he uses. So I got a referral to an ENT doctor who swabbed my nose (which took like 30 seconds), and then it got fedexed to the lab in MD. As far as the other tests, I just went to the places they said to go on the slip from the website. The only one done at labcorp was MSH, all the other ones I had done at quest. The only one quest was confused by was the MMP9. But after calling the central quest office, they figured it out. Quest did the C4a and C3a without even asking me about it.... I don't really know if they *need* to be done at quest or not but I would just have your Dr. call Dr. shoemakers office. They should be able to tell you...

    Anyways, I have started doxy 2 days ago, I have yet to herx or feel any better. So we'll see what happens. I am supposed to take it for a month and then decide from there wether to continue or switch.[This Message was Edited on 07/11/2008]
    [This Message was Edited on 07/11/2008]
  15. romalaw

    romalaw Member

    Hi, I'm sure you've posted it before but I don't remember. Was wondering who your doctor is, since I live only 15 miles from Ann Arbor.
  16. Forebearance

    Forebearance Member

    Hey Slaya,

    Remember Dr. S. said that the VCS test is for neurotoxins. Any neurotoxins. It's just that Lyme toxins and mold toxins are by far the most common ones that make people sick.

    Dr. S is pretty adamant about having the tests done at the proper labs. He said that the other labs don't do them as well. Like the HLA-DR by PCR has to be done through Labcorp.

    I also just went by the Lab Order Sheet on biotoxin.info/Lab_Tests that tells where to have the lab work done.

    But it's true that Dr. S. does not make it easy to get these tests done! He's obviously expecting most people to come see him. But that's not too practical for most of us.

    If you get Dr. B trained, at least it would be easier for me to go to Chicago to see a specialist.

    Hey, good luck with the doxy, arosenbl0!

    I was re-reading MW and noticed that MSH is supposed to be in charge of the immune defense system in our mucus membranes. Like the nose.


    [This Message was Edited on 07/12/2008]

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